HELP TO UNDERSTAND: Hi all I am Steve... - Fibromyalgia Acti...

Fibromyalgia Action UK
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HELP TO UNDERSTAND

64stevemac
64stevemac

Hi all I am Steve , my wife Karyn was diagnosed with rheumatoid arthritis around 8 years ago in that time she has gone through quite a lot , with pain and has had a lot of medication changes, over the past 18 months her pain has ramped up as to say , yesterday she was told that she had fibromyalgia and that was the cause of her increased pain, at this point I am struggling to know just what to say /ask Karyn has always been such a fighter being a marathon runner and doing Karate in her teens and early 20s she still does a fulltime job supporting people with learning difficulties and mental health issue's,i suppose what iam looking for is advice on how I can help her.

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YASMINTINA
YASMINTINAFMA UK Volunteer

Morning lovely to see someone joining us , the fact you have asked for help tells me that uve taken on board already what you are seeing, she seems to be holding down a lot as well with full time job with learning difficulties, so rewarding as I have a close friend that does this but also very tiring even for someone without these conditions. Sometimes actions speak louder than words so if you get in before her from work perhaps peel a few potatoes , kettle on when she comes in with a cuppa ready, run her bath after dinner that sort of thing . She will pick up on this , I know myself my Hubble is now taking on board what it’s like , he will get the washing in ,put the kettle on , make the bed , give me a hug when I’m having a bad day , that goes a long way and I know he s thinking of me. Perhaps she might even join us for a chat , lovely well run forum where people will relate , share some tips and advice. Also posting this link healthunlocked.com/fibromya... take care x

Hi Steve, well you have already taken the first step in helping your wife by coming on here and asking for advice. I would say gathering as much knowledge about the condition plus listening to other sufferer’s first hand experiences will help you understand the condition more, which in turn will help you better understand what your wife is experiencing (I've put the link to our main site below as you will find plenty of useful information and links on here). She is lucky to have such a caring husband, a supportive partner makes all the difference when coping with this condition. From what you have said about Karyn, she does sound very resilient and will probably find it hard to deal with the feelings of helplessness that can occur when battling the pain. It can be difficult when you have always been fit and healthy, doing everything for yourself to accept that you have to rely on others at times. For me personally I have conflicting feelings as there are times I do need assistance but I don’t like being treated like an invalid, which some family tend to do with the best of intentions. To this end what Yas has suggested is spot on, by not making a big deal about things but just getting on with doing little jobs that will make her life easier, your wife will pick up on these and appreciate your efforts. And of course listening when she needs to rant/vent/moan and be ready with gentle hugs. Also don’t forget to look after yourself. This condition is hard to live with but it also takes its toll on close family and friends who have to witness their loved one suffering. You will always find someone on here willing to listen and offer the benefit of their experience when you need some support yourself. Good luck and take care. x

fmauk.org/

Hi 64stevemac , I sympathise with you, I too have history of Ankylosing spondilitis which is R.A and now fibro,, the type of keep fit you are used to now sadly has to change otherwise she will excacerbate her condition, I have found hydrotherapy and swimming in a pool no cooler than 32 degress helps me enourmously, I also use the local jacuzzi with my daughter, she swims (she has A.S) and I go in the warm jacuzzi, a good physio will refer you to hydro and give you water excercise that you cannot do on dry land,, I retired from nursing 2 years because I couldnt cope with being on my fit so much, I tried a sit down job for 6 month which gave me terrible back pains upper and lowers..As for pain releif if she is onboard with a rheumatologist ask about having intra musclualr injections of kenalog, I had this for 6 years, it gives energy, relieves pain all over the body and allows you more activity BUT Pacing is something she needs to learn, her body will tell her when she has overdone it..

What a kind and caring husband you are; welcome.

What I suggest is you read up about Fibro; It hits all of us differently; some can continue with working, others can't.

The support I think she will need most is your understanding; She may need help with the craziest things; I can't open jars and bottles any more, and I've had to buy an electric can opener recently.

Your wife may find things like putting out the bins too difficult, getting up if she kneels down; She may get irritated and snappy as things grow too much for her. If she does craft she may have problems threading needles (sometimes it is the silliest little things which frustrate us!). Her eyes may need more trips to the optician. Exhaustion is something to be aware of; with RA she will already be in pain, but fatigue can knock her flat. Try to help her to do little but often, rather than one big thing, like a room clearout. Some of us fibromites get over ambitious when we feel reasonably well, and end up flat on our backs for days afterwards. There is something called The Spoon Theory (sounds crazy), which explains how we can learn to cope and harbour our depleted energy levels.

Please, at all times be observant, she may struggle for a long time before asking for help, and be aware of depression, it is another common companion to Fibro.

Occupational Therapy may be able to suggest adaptions and aids for her as well.

I hope this is helpful, your combined Fibro journey has begun.

Cheers, Midori

Thank you for your responses and welcomes guys , its a bit crazy isn't it that now that Karyn has her diagnosis and we have spent time reading through all the information available, there is an a positive vibe flowing through our home and its great knowing there are things you can do to make things better now that we know what has been the issue and its great.

Most important is listen to her, and try as much as possible when she is having a bad spell give as much physical and mental support that you can. It is hard to help cos its so individual and when in pain it is very lonely. The other thing I would say try not to blame, or critisise,

Sorry I had to finish my last mail to you this morning quickly. The problem with being the care giver/helper is that we are all different, sometimes my husband says yes i know you are in pain, etc. It gets him down, which I understand so do not be too hard on yourself if it gets you down. I worked with this for a long time only sleeping and housework at weekends so if you other half has to retired early etc all you can do is support her. It was the best decision I ever made it took two years of fighting cos at the time fibro was not as well known as it is now but in the end the fact I did not have to fight every day helped.

The fact that you have come onto the forum is a bonus, it shows you are a caring husband, it will be hell for you to see your wife going through this, but as you are willing to help that is half the problem.

Some sufferers feel hot some cold some benefit from hot compresses others cold it is trial and error. Hope things improve for both of you. Also any specific concerns come back on someone will be willing to give advice. I have only been on this forum for about 2 weeks and it has helped already.

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